Evelyn Adele Bowes: June 2005

Thursday, June 23, 2005

Three month mark.

Hi.
We took Evelyn to see the Pediatric Geneticist and the director of PedsCare today. We are now at three months and are entering a new stage, so we needed some advice about the future and what may come next.
We had last been there when she was 2 weeks old. At that time the understanding was that she did not have much longer to live. Now she has lived much longer than expected. This is due to all of Elizabeth's mothering and our support from PedsCare. Truly. The Pediatric Geneticist was clear that the only reason she is still alive is because of Elizabeth.
With the three month milestone behind us we look ahead to the next six months when she will be between three and nine months.
This is medically unchartered waters so it is difficult to know what to expect. As she becomes more active she may injure her wound and it will become infected. As her brain grows it may run out of room and she will fall into a sleep and stop eating and breathing. This is also the time when 60-70% of kids manifest seizures which would interfere with her ability to breath.
So these are the things that are likely ahead. She will always be severely handicapped for the remainder of her life which may be as long as her first birthday.

In the meantime, for those of you who have met her, she is largely the same. She is getting very fat, likes to cooo and still smells good and is soft to kiss.
The boys love her so much it is wonderful.
She is a joy to have around.
We are all very happy and life is mostly normal.

Over then next few years we will thank everyone individually. Every day I could fill the daily postings with people who helped that particular day not to mention the people from Alaska to Okinawa to England and Iraq who pray for her everyday and that I am not even aware of.